VISION 2020 UK Social Research Committee

Attachment 2

VISION 2020 UK Social Research Committee Draft Minutes of Meeting, 19/10/16, 12:30 – 14:30 at Guide Dogs for the Blind Association, 4th Floor, Walkden House, 10 Melton Way, London, NW1 2EB

Present: PS Philippa Simkiss (Chair), RNIB – arrived late

CD Catherine Dennison, RNIB CM Chris Muldoon, Guide Dogs DO Donna O'Brien, SeeAbility JS John Slade, RNIB LW Lynn Watson, Thomas Pocklington Trust MC Martin Cordiner, The College of Optometrists – delegating for Mike Bowen MBr Matt Broom, VISION 2020 UK MJ Mercy Jeyasingham, VISION 2020 UK

In Attendance: TK Tayyaba Kamal (Secretary), VISION 2020 UK

Apologies: Helen Doyle, Henshaws John Harris, Royal London Society for Blind People Mike Bowen, The College of Optometrists (Vice Chair)

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Phil Ambler, Thomas Pocklington Trust Yemi Tadesse, Sense

1. Welcome, introductions and apologies for absence (CD)  CD welcomed all to the meeting as PS was running late. Introductions were given and apologies were read out.

2. Declarations of Interest (All)  There were no declarations of interest.

3. Notification of any other business (All)  There were three notifications of any other business: a) Sense’s future in research raised by MBr; b) NICE guidance raised by DO; c) SAGE journal raised by MJ; and d) Fundraising Directors’ Meeting raised by MJ.

4. Minutes of the last meeting, 21 July 2016 and matters arising  The minutes were approved.  Matters arising: o Item 6, Black, Asian and Other Minority Ethnic (BAOME) survey . 6.1 PA to give results of TPT’s review on BAOME and sight loss to MJ is pending. . 6.2 MJ to get template of equality and impact assessment check list is ongoing. MJ has contacted NICE but has had no response so will contact other organisations. o Item 9, Children low vision, (a) Vision screening . 9(a).1 CM to update the committee about the sight test vs vision screening campaign with BCUK and BIOS. CM reported he is meeting with the Campaigns team next month.

. 9(a).2 MBr to get feedback from Lesley-Anne Baxter, BIOS about her vision screening meeting is pending. MBr to then feedback to CM. o Item 10, Workplan 2016-17 . MJ to invite someone from NICE to present at the next [October 2016] meeting. This is ongoing. MJ’s contact has left NICE and is now at Public Health England but is currently on maternity leave. MJ has been given details of a couple of other people to contact.  All other actions were completed or are covered on the agenda.

Actions: 4.1 Item 6.1, Black, Asian and Other Minority Ethnic (BAOME) survey – PA to give results of TPT’s review on BAOME and sight loss to MJ. 4.2 Item 6.2, Black, Asian and Other Minority Ethnic (BAOME) survey – MJ to get template of equality and impact assessment check list to be used for all VISION 2020 UK documents as a checklist to ensure the impact on BAOME communities has been thought about and addressed. 4.3 Item 9(a).1, Children low vision, Vision screening – CM to update the committee about the sight test vs vision screening campaign with BCUK and BIOS. 4.4 Item 9(a).2, Children low vision, Vision screening – MBr to get feedback from Lesley-Anne Baxter, BIOS about her vision screening meeting and then feedback to CM. 4.5 Item 10, Workplan 2016-17 – MJ to invite someone from NICE to present at a future meeting.

5. Update on Research and Practice Day, 4 November 2016 at RNIB, 105 Judd Street (CD)  CD thanked everyone for their comments and suggestions.

 CD circulated the programme to everyone. The day covers children, BAOME and there is a national perspective from Holland from Royal Dutch Visio. A film is being made to show the interaction and benefits an ECLO has on a person with vision impairment.  The day is now fully booked.  At the end of the day, the take home messages that have been learnt will be discussed along with suggestions for future policies. A paper will be produced afterwards on the key findings.  Innovative ways of getting feedback at the end of the day were discussed. The following suggestions were made: o relaxed conversation; o pledge wall; and o thoughts written on notepads throughout day and submitted at the end of the day.

6. Knowledge hub (MBr)  MBr reported he and Beverley Duguid, TPT are in the planning process. A business plan is being created including information about what the knowledge hub will look like, how to populate it and whether a dedicated person is required to update it.  A short questionnaire with 10 questions has been put together which will be circulated to a few people to find out what is easy and difficult to find.

7. Sight loss statistics (JS)  JS reported on his paper about updating the ‘Safe statistics and key messages about sight loss’ publication. As the document is out of date, it has been taken down from the RNIB intranet. The new name will be ‘Eye health and sight loss stats and facts’.  There will be more focus on eye health and will include adults as well as some information on children. There is another publication which has more details on the issues

for children. It will be relevant for all of the UK not just England.  This will be launched in January/February 2017 so JS asked everyone to inform him of any new research or evidence to be published before December. MC highlighted the Prevalence of Visual Impairment in People with Dementia (PrOVIDe) study which can be included in the publication.  It was agreed at the next meeting in January we need to discuss what information from the publication is to be included on the postcard. It is therefore important that John Harris and Mike Bowen attend this meeting.  It was suggested that the VISION 2020 UK Public Affairs Committee should be informed about this publication for their constituency briefing.

Actions: 7.1 All to inform JS ([email protected]) of any new research or evidence to be published before December 2016 for the Sight loss stats and facts publication in January 2017. 7.2 MC to send JS ([email protected]) link for the PrOVIDe study. 7.3 PS/TK to add item to the January agenda for Sight loss stats and facts postcard. 7.4 MJ to inform the VISION 2020 UK Public Affairs Committee about the Sight loss stats and facts postcard during next week’s meeting.

8. Beyond 2020 (MJ)  MJ explained Beyond 2020 was a research project on service improvement involving Richard Wormald, Consultant Ophthalmologist, Anita Lightstone (previous COO of VISION 2020 UK) and Professor Sir Muir Gray.  As discussed at the previous meeting, the 17 research questions around services were circulated to other VISION 2020 UK committees. There have been 30 responses with people highlighting their top 5 research 5 ______VISION 2020 UK 2nd Floor, 105 Judd Street, London WC1H 9NE Reg. Company No. 7850769 Charity No. 1146746/SC046837 Attachment 2

questions. A paper with the responses will be circulated to the committee next week for their comments and this can be discussed at the next meeting in January.  It was suggested the next meeting in January be extended by one hour in order to fit in this item and the sight loss statistics postcard.  It was highlighted there may already be existing research on some of the 17 research questions which would need to be checked before starting new research.  MJ discussed Anita Lightstone’s paper on the Star (social and technical allocation of resources) initiative. Anita is carrying out research in Oxford which is funded by TPT. Different treatments and services in the community for age related macular disease will be compared and a quality-adjusted life year (QALY) put against it to rank their cost effectiveness.  The next step will be to apply to NIHR for a grant for a meta analysis. In the meantime, TPT are funding a pilot study in Thames Valley which is being conducted by Anita.

Actions: 8.1 TK to circulate paper on responses to the Beyond 2020 top 5 research questions to all. 8.2 PS/TK to add item to the January agenda item for Beyond 2020 prioritising research questions. 8.3 TK to extend RNIB room booking time by one hour so the meeting ends at 14:00. If not possible, TK to book an alternative venue. 8.4 All to inform TK ([email protected]) if there is existing research on the 17 research questions.

9. Workplan 2016-17 (All)  It was agreed the workplan will go up to 31 March 2017.  PS stated there may not look like there is much in the workplan, but there is actually a lot of work involved.  MJ agreed to discuss with Jenny Cook, Chair of the VISION 2020 UK Children & Young People with a Vision 6 ______VISION 2020 UK 2nd Floor, 105 Judd Street, London WC1H 9NE Reg. Company No. 7850769 Charity No. 1146746/SC046837 Attachment 2

Impairment (CYPVI) Committee about meeting after January 2017 to discuss item 3 on the workplan (review shared statistics for VISION 2020 UK CYPVI Committee).  It is important that John Harris is also included in these discussions and is present at the meeting.

Actions: 9.1 MJ to contact Jenny Cook, Chair of the VISION 2020 UK CYPVI Committee and John Harris to arrange a meeting after January to discuss reviewing the shared statistics for the VISION 2020 UK CYPVI Committee. MJ to cc PS into emails.

10. Anything relevant for the cross sector VISION 2020 UK Public Affairs Committee as they engage with Parliament? (All)  MJ explained the VISION 2020 UK Public Affairs Committee has recently been set up to raise the awareness of MPs on eye health and sight loss.  The committee will produce an annual constituency briefing for January 2017 and an electronic newsletter per parliamentary term.  The committee has asked several other VISION 2020 UK Committees about information they would like to be highlighted in the briefing.  As mentioned above in item 7, the Sight loss stats and facts would be useful to have at a constituency level.

11. Does anything discussed today have an impact on BAOME communities? (All)  The following items discussed have an impact on BAOME communities: o Item 5, CD stated BAOME issues are going to be discussed at the Research and Practice Day. Gozie Joe Adigwe, RNIB will be presenting on this issue. o Item 6, knowledge hub – MBr informed there have been discussions about BAOME papers and research; 7 ______VISION 2020 UK 2nd Floor, 105 Judd Street, London WC1H 9NE Reg. Company No. 7850769 Charity No. 1146746/SC046837 Attachment 2

o item 7, sight loss statistics – JS reported there is some information about higher risk for BAOME communities included in the publication; and o item 10, MJ stated information about BAOME communities is included in the parliamentary briefing.

12. AOB a) Sense’s future in research (MBr) o The question was raised about the future of research at Sense following the departure of Anna McGee and now shortly Yemi Tadesse. o MBr agreed to contact Sense to find out about this.

Actions: 12(a).1 MBr to contact Sense to find out about their future in research following the departure of their research team.

b) NICE guidance (DO) o Do informed NICE are creating guidance on ‘Adults with lifelong or very severe hearing or visual impairment: health, well being and social care (https://www.nice.org.uk/guidance/indevelopment/gid- ng10042) and suggested we be included in this process. o A timeline for the guidance will be published soon, then the topic details and selection of panel experts and service users.

c) Sage Journal (MJ) o MJ mentioned VISION 2020 UK are in partnership with SAGE journal to produce an open access online eye based journal called ‘Sight health in practice’. An Editor in Chief is being recruited and recommendations are welcomed. MBr agreed to send information about this to the committee.

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12(c).1 MBr to circulate information about SAGE Journal and recruitment for Editor in Chief to all so recommendations can be made to him of a suitable Editor in Chief.

d) Fundraising Directors’ Meeting (MJ) o MJ reported an agenda will be circulated at the end of the week for the Fundraising Directors’ meeting taking place on 9 November at Anglia Ruskin University, Cambridge. o A report can be given after the meeting. o MJ is having lunch at the end of this week with Professor Sir Michael Rawlins, Chair of Bio Bank and former Chair of NICE to get his involvement with the Prevalence Study.

13. Date of next meeting Date: 25 January 2017 Time: 11:00 – 14:00 (Note time changed from 11:00 – 13:00) Venue: Meeting Room 6, Lower Ground Floor, RNIB, 105 Judd Street, London, WC1H 9NE

2017 meeting dates (all 11:00 – 13:00)  19 April 2017, Pocklington Hub, Tavistock Square  11 July 2017, Pocklington Hub, Tavistock Square  2 November 2017, RCOphth

Item Action Member Minutes of the last meeting, 21 July 2016 and matters arising 4.1 Item 6.1, Black, Asian and Other Minority PA Ethnic (BAOME) survey – PA to give results of TPT’s review on BAOME and sight loss to MJ. 4.2 Item 6.2, Black, Asian and Other Minority MJ Ethnic (BAOME) survey – MJ to get template of equality and impact assessment check list to be used for all 9 ______VISION 2020 UK 2nd Floor, 105 Judd Street, London WC1H 9NE Reg. Company No. 7850769 Charity No. 1146746/SC046837 Attachment 2

Item Action Member VISION 2020 UK documents as a checklist to ensure the impact on BAOME communities has been thought about and addressed. 4.3 Item 9(a).1, Children low vision, Vision CM screening – CM to update the committee about the sight test vs vision screening campaign with BCUK and BIOS. 4.4 Item 9(a).2, Children low vision, Vision MBr screening – MBr to get feedback from Lesley-Anne Baxter, BIOS about her vision screening meeting and then feedback to CM. 4.5 Item 10, Workplan 2016-17 – MJ to invite MJ someone from NICE to present at a future meeting. Sight loss statistics 7.1 All to inform JS ([email protected]) JS of any new research or evidence to be published before December 2016 for the Sight loss stats and facts publication in January 2017. 7.2 MC to send JS ([email protected]) MC link for the PrOVIDe study. 7.3 PS/TK to add item to the January agenda PS / TK for Sight loss stats and facts postcard. 7.4 MJ to inform the VISION 2020 UK Public MJ Affairs Committee about the Sight loss stats and facts postcard during next week’s meeting. Beyond 2020 8.1 TK to circulate paper on responses to the TK Beyond 2020 top 5 research questions to all. 8.2 PS/TK to add item to the January agenda PS / TK item for Beyond 2020 prioritising research questions.

Item Action Member 8.3 TK to extend RNIB room booking time by TK one hour so the meeting ends at 14:00. If not possible, TK to book an alternative venue. 8.4 All to inform TK ALL ([email protected]) if there is existing research on the 17 research questions. Work plan 2016-17 10.1 MJ to contact Jenny Cook, Chair of the MJ VISION 2020 UK CYPVI Committee and John Harris to arrange a meeting after January to discuss reviewing the shared statistics for the VISION 2020 UK CYPVI Committee. MJ to cc PS into emails. AOB (a) Sense’s future in research 12(a).1 MBr to contact Sense to find out about MBr their future in research following the departure of their research team. 12(c).2 (c) SAGE journal MBr to circulate information about SAGE MBr / ALL Journal and recruitment for Editor in Chief to all so recommendations can be made to him of a suitable Editor in Chief.

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